Refractory Epilepsy simply means that seizures (one or more)continue to occur although the patient is being treated with more than two antiepileptic drug (AED) during an 18 month period.
An option for refractory patients is Vagus Nerve Stimulation therapy (VNS). This is a simple device that is placed in a pocket of tissue in the chest. A wire leading from it to the left Vagus nerve in the neck is then placed and it sends an electrical impulse to the brain to "reset" it. It functions similar to a pacemaker. VNS Therapy is not a drug and does not interact with other medications. The VNS sends periodic stimulations to the brain which help to prevent sychronus neuron firings that cause seizures. Treatment is delivered at regular intervals all day, by settings programmed into the device by your epileptologist.
Our Caleb had a VNS implanted in May of 2008. While his response was not as dramatic as we had hoped in stopping his Tonic seizures, he did have his Myoclonic seizure numbers to go from 300+ daily, to around 100 daily. That in itself was a blessing.
A magnet is worn by a caregiver or by the patient that is able to be placed over the VNS device when a breakthrough seizure occurs. This "wand" is capable of delivering an elevated stimulation to the brain to try to interrupt the seizure.
I can remember at first making sure and timing every time the VNS would send a stimulation, but eventually Caleb's settings were advanced so that it was "on" more than it was "off". The most dramatic thing we saw was during one Tonic seizure after he'd first started VNS therapy, while placing the magnet over the device- his seizure stopped. Although this did not happen regularly for him, even being able to stop one large seizure was a glimmer of hope for improvement.
VNS Therapy should be viewed by the family/patient as a medication. Although it has no typical side effects that medications can have, it is a treatment that has potential benefit. Many are concerned that it involves surgery, but I can attest that it is minimally invasive.
Over 60,000 patients have begun VNS Therapy. Those who benefit from VNS Therapy can achieve seizure reduction and in some cases eliminate seizures completely. The positive effects of VNS Therapy actually improve over time, sometimes taking a few months to a year or two to reach optimum performance levels. Medications may be able to be weaned as a result of positive VNS Therapy.
Many anxieties exist with any surgery. However, when a patient is refractory, VNS Therapy should be carefully considered. For more information on VNS Therapy click here : Cyberonics
Thinking of Caleb, and the many procedures he went through in his short life, I remember his VNS experience as one of hope.